Chances are, you or someone you know has fallen victim to medical gaslighting at some point, especially as we see an increase in this unfortunate practice in today’s modern health care system. Maybe you have experienced medical gaslighting without even realizing it. What exactly is medical gaslighting? It’s a term given to a practice stemming from our medical community where doctors and specialists alike make patients feel a multitude of unwanted feelings. They may feel like their ailments or symptoms of complaint aren’t valid, making them feel ignored, dismissed, or leaving the patient feeling defeated as they are left with even more heightened concern, frustration, and distrust than prior to meeting with the doctor. Patients may then question their own thoughts or feelings as they sift through ways to overcome this new sense of burden and displacement they have. Sometimes patients simply feel dismissed, as I did when I was diagnosed and eventually cured from a rare, yet emerging disease known as Granulomatous Mastitis. When our health care system lacks interest, ability, and fails to listen to its patients or be proactive, this can lead to a failure to both effectively diagnose and treat the patient. Not only have I been a victim of this, but so have my own father, mother, and uncle, who lost his life due to medical negligence or medical gaslighting, if you will.
So how do you know if you are experiencing medical gaslighting? Besides your gut or intuition implying something isn’t right about a situation or a provider, keywords you may commonly notice, which may be red flags, are words of blame or excuses. Some specific examples you may encounter are: you might have anxiety, you’re too young, it’s just in your head, this shall pass, or you’re just paranoid, to name a few. Anyone can fall victim to medical gaslighting, especially women in particular. Over 70 percent of women have said they felt they’ve experienced medical gaslighting. I personally think we’ll see an increase with our elders too, as I’ve seen examples of ageism which can essentially fall into the same category.
Years ago, when I was diagnosed with granulomatous mastitis, I fell into that very 70th percentile. I was dismissed by an infectious disease specialist. She completely disregarded an important finding in an original pathology report, dismissing a bacteria detected as just likely part of my natural skin flora or a contaminated sample. Nothing was done, and I left feeling at a loss and more knowledgeable about the condition than her. I didn’t have a good feeling about her and never went to see her again. My feeling would later prove to be valid as after being forced to become my own diagnosis detective, that bacteria was actually pathogenic and environmentally associated. I needed proper treatment. Though, I had to partner with a specialist who was open and willing to listen and order the test I requested, which ultimately gave us the answers I longed for. This journey led me to feel empowered, confident in both my developed medical knowledge and ability, while never again fearing to not only stand up for myself, but advocate for what I need, deserve, and want moving forward with our health care system. I wrote a successful book about my own journey which is now helping both other women and even doctors across the world. Many women with the same condition continue to feel dismissed and experience medical gaslighting with the disease, so I’m hoping my book will continue to be a game changer. I became the best advocate for my own family, including my father and mother, and I wish I would have intervened for my uncle as unfortunately, his life is now lost.
I recognized my dad was either having a stroke or had encephalitis. I called 911, and luckily time was on his side as he was able to have a drug known as TPA administered. After a week-long hospital stay, no doctor or specialist ever sat down with my mother and me to explain all of the circumstances, testing, and plans moving forward. All we knew was they recommended a rehabilitation center. I had to call the hospital and demand a phone call before they released him. No cause was determined for his stroke during that stay, though I knew it was his heart based on symptoms, history, and circumstances leading up to his stroke. Again, I would be right with my suspicions. I found a cardiologist willing to listen and advocated for my dad. The hospital never ordered a test known as a transesophageal echocardiogram (TEE). He would later order that test and finally we had an answer: a Patent Foramen Ovale (PFO) was to blame.
My mom had chronic debilitating headaches. She went to multiple doctors who only offered relief-type suggestions, like taking OTC medications or taking more of a prescription drug that could help, with no avail. After a third primary appointment for these headaches, she was referred to a neurologist. I attended this appointment with her where this specialist tried to diagnose her with headache syndrome, without sufficient testing to support his theory. I knew better. He got to experience the diagnosis detective that day, to say the least. He then said to us he would go ahead and order a CT scan just to give us peace of mind. To this day, I wonder what his first thoughts were when he reviewed the CT scan results: a brain tumor with idiopathic intracranial hypertension. He didn’t even call us to share the results. He never admitted he was wrong or apologized. We actually saw the results in her MyChart and many days later phoned his office asking when he planned to call and admit his original diagnosis was wrong. She never went back to him, as one could imagine why.
My uncle developed a rash and swelling on his legs. Walking was becoming almost unbearable. He went to the ER multiple times. Multiple theories were given, including cellulitis or just a dermatological rash, along with many therapies tried with not much resolution or relief. I messaged my uncle when he was in the hospital and mentioned the test we ordered that resulted in the bacteria I had. He asked a doctor to order it, and the response was, “We don’t do that here.” What hospital can’t order a test or find out how to? Why did they never perform a biopsy of the rash? Honestly, throughout messages and conversations we had, I felt he was being a victim of medical gaslighting, specifically ageism at 75 years old. He did get diagnosed with Lymphedema, and when asked what he could do about it, the doctor didn’t offer much, indicating it was something he would just have to live with. He accepted his fate, unfortunately. He trusted doctors, but deep down he felt hopeless. He said to me he felt like an outsider, scared to leave his home because of what people might visually think of his legs. My uncle was finally under wound care after his primary care physician advised it. Later, wound care believed something far more serious was going on than other doctors failed to recognize or believe. They referred him to a cardiologist. He never made it to that appointment as a short time prior to it, he was found deceased in his apartment from sudden cardiac arrest. It is now suspected that the rash could have been something like stasis dermatitis, a condition linked to vascular and heart-related issues. The health care system failed him. I’m not the only one who believes this either. His best friends witnessed his hospital stays and were there for him in his time of need during his 6-month ordeal prior to his passing.
Who really is to blame though when it comes to medical gaslighting? Is it the networks? Is it the providers? Is it the patients? Is it insurance companies? Is it a combination of all four? At the end of the day, our health care networks are a business with a goal to make money and be profitable. Perhaps they put too much pressure on our providers to see as many patients as they can in as short an amount of time as possible. I have even felt like I was at a factory and not a doctor’s office before in the way the practice handled each patient. My own specialist, who was a personal contributor to my book, referenced that her patient load was too high to research and devote the time I did to getting answers. Certainly, I appreciate her transparency and willingness to be open to what I shared with her, though as patients, it should never be our job to do their job. Though again, who is to blame? Here, she didn’t have the time because her patient load was too high; that sounds like a network issue to me.
While the providers may want to then blame their own networks, they still took an oath to do no harm and should be able to practice just that, owing every patient the time and resources needed to help them in the best way possible. The oath should supersede medical gaslighting practices any day. As patients, we’re expected to be our authentic selves, being open, expressive, and taking the time to prepare for appointments, completing a laundry list of medical paperwork that doctors probably don’t even have the time to read. Doctors should offer the same common courtesy in return and be able to do so freely.
As patients, if we want to help prevent medical gaslighting from happening to us, we must always be our best advocates and share honest, ample information to best help our circumstances. Perhaps follow my own “A+ List to Advocacy,” which is Act, Assemble, Ask, Acquire, and Apply. Take a journal, take someone with you, and request that the doctor include anything they dismiss of your requests in the Mychart appointment notes and why. What can happen if the providers, doctors, and patients can’t work effectively and cohesively? Well, medical malpractice exists for a reason. Obviously, that would be a last-resort effort, hopefully. Bad reviews can flourish on social media, both hurting the networks and health care professionals too, so why not offer the best care it takes? Maybe doctors need to stand up against the pressure of these networks and let them do their jobs. Though, maybe insurance companies are standing in the way of that. Tests are expensive, but so is medical malpractice. We need to let doctors practice medicine. Period.
Medical gaslighting will likely always exist, though we can strive to help prevent it. You must always be your best advocate. You know your body better than anyone. Always have, and always will.
Tami Burdick is a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis.